Recently, we asked IAHPC Board Members to address one topic. The subject for our most senior members was: ‘What I know now that I wished I knew when I started out in palliative care.’ Here are their responses.
By Derek Doyle
I came into palliative medicine (or hospice care, as it was then called) having seen many deaths, much pain, and hundreds (if not thousands) of grieving relatives — nearly all in southern Africa where I had been a missionary surgeon. Returning to Scotland, I had similar experiences in both family and hospital medicine. In each place where I worked, my medical and nursing colleagues were dedicated to compassionate caring, up-to-date with medical advances, and eager to provide high quality ‘team caring’ (though that was described in many different ways). I felt ready to start work as Scotland's first full-time ‘hospice doctor.’
What I was totally unprepared for was hearing an oft-repeated joke — ‘None of my patients has ever come back to complain about my care!’ — usually followed by uncontrolled laughter. Without fail, if there were other family doctors joining in, people told their favorite anecdotes about grateful, pain-free patients or appreciative relatives.
And yet, the same doctors who spoke of their ‘pain-free’ patients seemed to forget that they had been asked by patients and their relatives to call me in to help with what was thought to be intractable pain! Equally startling was how few felt they needed updates on pain and/or symptom control. Yet a Scottish study showed that pain was deemed to be the major problem in the majority of dying patients: 55% were on inappropriate analgesics, and 75% of doctors were reluctant to prescribe opioids for fear of addiction.
In short, the most startling thing in those early days (and possibly even today) was the belief of many doctors that they were good at pain management, and needed no help in providing it.
By Roger Woodruff
When I 'started out in palliative care'…
I do not think there was ever a time when I ‘started out in palliative care.’ I never made a decision to pursue palliative care or become a palliative care doctor.
As an undergraduate, all our teaching was focused on the curative model. Death and dying were not mentioned, as they amounted to medical failure. The psychosocial aspects of malignant disease did not exist.
After I graduated, I trained in Melbourne and then London as a hematologist-oncologist. Back in Melbourne, I found myself caring for numbers of people with malignant disease, both in the public hospital system and in private practice. I was never happy to simply discharge patients from my care when they relapsed or developed progression of their disease. Standard practice at the time was to inform the general practitioner that they were responsible for the patient’s care, or they were referred to the in-patient, terminal care hospice, Caritas Christi. My oncology colleagues regarded me as a bit strange, a bit odd.
So I found myself more and more looking after patients with relapsed and/or terminal disease, doing what I could for their physical symptoms as well as the rest of their suffering. Looking back, I wonder if it was not some of the medical social workers with whom I had the privilege to work, who taught me to look at the whole person and to care just as much, or even more, for those whose disease was progressing; it certainly wasn’t my medical teachers.
Over time, what I was doing came to be known as palliative care. There was a slowly evolving movement, spearheaded by the likes of Derek Doyle, Cicely Saunders, and Balfour Mount, that advocated for better care — in every way — for those with a life-threatening or terminal illness.
In 1989, as a member of the national executive of the Medical Oncology Group of Australia, I talked them into including a one-day symposium on multidisciplinary palliative care at the annual conference, a first for Australia. It was well attended and well received by a range of health care professionals, but very much looked down upon by my oncology colleagues. If I attended oncology meetings after that, there were quiet asides, ‘You know, he’s interested in palliative care.’ And years later when we had established the palliative medicine societies, I would hear, ‘He’s really a medical oncologist, you know.’
If you treat people for cancer or leukemia, I feel that there is some obligation to continue their care should their disease relapse or recur. All the way, to death and bereavement. It can be hard work, but it can be rewarding and is definitely a privilege. The term palliative care came later.
I recently reviewed a book (Elisha Waldman’s This Narrow Space, see the May Newsletter) written by a young oncologist who seems to share my ideas that should a patient’s disease relapse, it is the oncologist who should provide continuity of care, including first-class palliative care. He recounts what one of his own teachers told him as a student: ‘Never forget, if you accompany your patients only until the battle is lost and they are dying, if you abandon them at that point and leave them alone, you have done only part of your job, and not done it well. Your job is to accompany your patients until they are either better or safely on the other side.’ I agree with that.